Colonoscopy in patients with inflammatory bowel disease: self-reported experience, understanding, anxieties and tolerance of the procedure

Main findings

Mucosal healing has evolved as a key endpoint in the assessment of therapeutic response to medical therapy in IBD patients. Requests for colonoscopy are therefore likely to continue to increase in this patient group making it particularly important to gain insight into the patients’ perceptions of this procedure. A good patient experience in the endoscopy unit is critical in facilitating long term medical management and continued engagement in services in this cohort. We have found that both women and young patients have a heightened concern about this procedure although actual reported discomfort following the procedure did not differ in these sub-groups from the rest of the cohort. Patients with an IBD disease duration of more than 5 years expressed significantly more procedural discomfort than patients with a shorter duration.

Findings in relation to other studies

Our research highlights a significant difference in the perception of colonoscopy between men and women. Females had a significantly worse perception of colonoscopy in four key areas: concerns about the procedure and associated risks; tolerance of bowel preparation; disruption to life and travel concerns to and from hospital, but not procedural discomfort itself. The results illustrate that women have higher pre-procedural anxiety than men. There are limited studies differentiating between gender and pre-procedure anxiety in patients with IBD, but our findings are supported by other work examining procedural anxiety in a non-IBD population undergoing colonoscopy^9,10.

In our cohort, females showed a tendency towards increased procedural discomfort compared with males, approaching statistical significance. The majority of previous work on this subject suggests that females experience more discomfort during colonoscopy^11–13, although this is not a universal finding¹⁴. It has been suggested that performing colonoscopy on females may be more difficult and more uncomfortable because of previous gynaecological surgery or differing colonic and pelvic anatomy¹², and of note in this respect the procedure usually takes longer in women¹⁵.

Bowel preparation in colonoscopy is another important area of patient concern, with one study suggesting it is the most unpleasant part of the whole process¹⁶. This was mirrored in our group of patients with bowel preparation perceived as the most burdensome aspect of the whole episode (joint top with procedural discomfort). In our study, women were significantly less satisfied with bowel preparation compared to men, a finding supported by others¹⁷. The negative symptoms associated with bowel preparation may magnify pre-procedural anxiety in this group of patients¹⁸.

Our results showed significant age-related differences in two measured outcomes. Patients aged 55 years or more were less worried about the procedure and risks. Secondly, this group reported that they found bowel preparation less burdensome than their younger counter parts. In keeping with our findings, a study showed older people expressed less discomfort associated with bowel preparation than younger patients and were overall, more satisfied¹⁷.

However, we did not observe differences in procedural discomfort between the two age groups. The literature in this respect is conflicting. A Finnish retrospective study reported that older patients tolerate the procedure better than younger patients⁹. Conversely, Kim et al. reported no significant age-related differences¹⁹. Other studies have indicated older patients may tolerate the procedure less¹². These inconsistencies between studies may reflect differences in the indication for and the underlying pathologies of the respective patient groups studied. Additionally, ‘older age’ is categorized differently between studies.

Our study showed that patients who had IBD for more than 5 years expressed significantly more discomfort than patients having the disease for less than 5 years. This finding may relate to underlying disease factors, such as inflammation, stricturing or reduced intestinal compliance resulting in increased technical difficulty and reduced patient tolerance. One large study reported that higher doses of sedation are required amongst IBD patients with active disease²⁰. An alternative explanation is that endoscopists now administer lower doses than historically in response to tighter monitoring and auditing of sedation practices. In a single centre study from the UK of sedation practices over a 10 year period sedation rates for outpatient diagnostic upper endoscopy reduced by 54%²¹. Certainly, in light of the 2004 NECPOD report ‘Scoping our Practice’²², sedation in all patient groups, particularly the elderly, has come under close scrutiny, and inevitably has influenced recent practice in endoscopic sedation. Kale et al. suggested endoscopy sedation should be individualised to the specific need of the IBD patient, particularly those that have active disease²⁰ and this is clearly pertinent to the vulnerable subgroups we have identified, namely women and young patients.

The majority of our patients were prepared to undergo colonoscopy as frequently as their physician felt it appropriate. Similarly the majority also found colonoscopy ‘bearable’. These findings support the evidence that colonoscopy is generally associated with high levels of patient satisfaction and willingness to return²³. This is a particularly important factor in patients with IBD, given that they are likely to undergo repeated procedures, especially when they enter into colorectal cancer surveillance programs. Our data suggests a high level of understanding of the indications of the procedure, which may further explain why most are prepared to undergo colonoscopy as frequently as needed.

Strengths and limitations

This study has some limitations, particularly since responses were obtained retrospectively which opens it up to recall bias. If the most recent colonoscopy was a negative experience, irrespective of previous positive experiences, this may have impacted adversely. In one study, a fifth of patients reported that colonoscopy was more uncomfortable than they had expected²⁴ and a previous experience of pain during colonoscopy was found to influence the perceived experience of pain during a subsequent procedure⁹. We sought to evaluate the patients’ qualitative perception of colonoscopy but a more objective and validated verification of discomfort during colonoscopy (or immediately following) might have led to different conclusions. We did not assess the patients’ requirement for sedation and analgesia, which may also have later influenced patients’ perception given the recognised retrograde-amnesic effect of benzodiazepines but we feel our study design best reflects the patient experience in routine clinical practise. Finally, our questionnaire did not include questions relating to ‘procedural embarrassment’, which has been significantly linked to non-compliance in endoscopic screening programs²⁵.

Implications and future work

Providing patients with a positive experience is clearly important in maintaining continued engagement with medical services. Our findings indicate steps need to be taken to address the particular concerns of women and young patients with IBD in advance of their procedure. How might we ameliorate perceived pre-procedural patient concerns better? Consultation prior to colonoscopy with a clinician is associated with increased patient satisfaction²⁶. This should form part of the consent process that is ideally performed before the day of procedure and after the clinic consult, as is the practice for the national bowel cancer screening programme. However, this may not always be logistically feasible. Music during the procedure has been shown to improve procedural experience and reduce anxiety amongst women and increases wellbeing amongst men, as well as significantly reducing discomfort^27,28. Similarly, continuity of endoscopist for each procedure also lowers anxiety in females²⁹, although this approach may be difficult to adopt in NHS endoscopy units that usually have pooled waiting lists and endoscopic trainees. Reviewing previous sedation requirements and recorded pain scores should be routine endoscopic practice to individualise the sedation plan. The analgesic adjunct of inhaled Nitrous oxide, a quick acting potent analgesic and anxiolytic, may also be helpful reducing excessive intravenous sedation³⁰. By taking all these factors into account the global patient experience can be improved.

In conclusion, our research highlights a significant difference in the perception of colonoscopy dependent on gender, age of the patient and disease duration. These results should prompt endoscopy units to improve the experience of colonoscopy particularly amongst these subgroups of patients with IBD. In the future surrogate markers such as faecal calprotectin may reduce the burden of colonoscopy. In the meantime, further research is required to develop simple clinical tools to better identify and improve the experience of vulnerable patients that would otherwise tolerate the colonoscopic experience poorly.